Thursday, October 15, 2009

Keith's Aunt Di came to visit in October. She loves Neavey to pieces and Neavey really enjoyed all the attention. It was so nice to have Di come hang out with us. We enjoy sharing Neavey with anyone who can find the time to visit. Book your spring and summer visits now!

Saturday, October 10, 2009

One of Neavey's honorary grandmothers, Linda, made this feeding smock from some sketches, an old smock about 10 times smaller and some materials I sent plus some from her own stash. It is working out great. Now we only need about 10 more.

CHECK IT OUT- from Amherst Alumni magazine

Neavey's diagnosis or lack thereof...

Her neurologist would tell you she has cryptogenic generalized epilepsy. It's not so much a diagnosis but a state or a condition. What does it mean? Neavey has complex partial seizures and generalized seizures. They originate generally in any part of the brain. And the kicker is...we don't know why she has them, or why we can't control them completely.

And it would seem they have no relationship to her severe developmental delays which include no receptive or expressive language. She cannot take care of herself in any way. Once upon a time (when she was a normally developing 3 month old- sans the seizures that started at that time) her father (Karl) and I were told that she would most likely grow out of it by age 5. If you're new to Neavey's story, her father and I are divorced. Although I wish I had her with me more of the time we do have a 50/50 joint custody arrangement.

No one can explain why Neavey is but I know what she is. She's the love of our life. We want to share her with any part of the world that can bear it. So, we will always bathe her, and feed her, stretch her legs, fix her hair, soothe her after big scary seizures, and a zillion other things... but most of all we will love her.